Since his initial 3 week stay, we have been back to the Children’s Admission Unit more times than I care to count, just to get him checked out and ended up being kept in another few times, once with possible breathing issues and the latest was with sickness and diarrhoea.
Each time it quite obviously hits his kidneys as you can see his urine output change in colour and quantity.
We were starting to get concerned that things just weren’t changing as the protein in his urine was still at over 600, but suddenly there was a breakthrough, when he went in with diarrhoea his protein levels went to over 800, but then only a week later it had gone down to 165 which although it is still much higher than it should be shows that things are finally moving in the right direction, and will hopefully keep going that way.
Last week after much fighting we had an appointment at Glenfield hospital to have a full heart check, as many people who have kidney problems also have heart issues and he has high blood pressure we felt it was important to get it checked. Once again they were very impressed at how he handled everything, one asked whether he had been in hospital much as he was so good, really not something you want to be able to say about your child that they are that experienced at hospital ‘routines’
He had the usual height, weight, blood pressure done he also had ultrasound and ECG.
His blood pressure is still high, his systolic was 130 when it should be around 90, but other than that his heart is looking ok, however as he has such high blood pressure still they were surprised they hadn’t seen him before, although they don’t need to be investigating why he has high blood pressure (we know it is his kidneys causing it) they want to keep an eye on it to make sure that it isn’t doing any further damage to his heart, so we will be back there in 6months.